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Watch and learn guys and gals

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    Watch and learn guys and gals

    https://youtu.be/QIReEfsOWzY
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

    #2
    Hi Matthew,
    I no longer watch anything about MND as I know there is no predictable pattern.It’s not denial as I am fully aware of the physical effects that might head my way.
    I prefer to make the choice of not watching life stories of people living with MND .
    I also have vivid dreams so even with TV I am selective and don’t watch programmes that would disturb me.
    However many members might want to read and watch all they can find on MND and find the link you posted informative.

    Have a good Sunday Matthew.
    Best wishes
    Mary


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      #3
      We are never too old to learn new things and to be fair I was prompted by the influx of new names I am seeing unfortunately.
      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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        #4
        I cant watch either. I might be sticking my head in the sand but what will be will be.

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          #5
          The message is forward planning and I found it very useful.
          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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            #6
            I know. I'm just chasing my tail lately. Xxx

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              #7
              Originally posted by Mary C View Post
              It’s not denial as I am fully aware of the physical effects that might head my way.
              I agree with you Mary, it's a very depressing watch for many people and could actually stop people planning if they find it too painful to see a future version of 'themselves' ...

              In a similar vein, I hate bringing my very advanced body to MND Clinic appointments because I see the fear and shock in the eyes of those in the early stages of ALS πŸ˜₯πŸ˜₯

              Some people will find it a worthwhile watch. xx

              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

              ​

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                #8
                I think it's essential viewing for a newbie. Full disclosure is always best.
                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                  #9
                  Originally posted by matthew55 View Post
                  I think it's essential viewing for a newbie.
                  Eek, I wouldn't agree πŸ€” Each to their own.😘

                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                  ​

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                    #10
                    Then you and I shall agree to disagree πŸ˜πŸ€—πŸ˜˜πŸ˜xx
                    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                      #11
                      But we have a choice. Which is the main thing.

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                        #12
                        Ignorance is as bad as denial. The only person who is hurt is yourself. How does that make sense? πŸ€”πŸ§πŸ™ƒπŸ€―xx
                        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                          #13
                          I do think we will all have our own limits as to what we do and do not want to know. Personally when my neurologist said how much do you want to know about MND my reply was 'nothing more today' as I was already at capacity of how much more knowledge I could manage emotionally.
                          I prefer small bits of information...gradually becoming more aware. This forum has helped. I'm definitely someone who if given the worst case scenario will catastophise and jump straight to that point. Making my life miserable.
                          I respect that for others every detail, story and possible outcome needs to be given. It's important that we can voice what's right for us as individual. It's not one size fits all IMO.
                          I try not to watch stories on TV that involve MND. Head in the sand or mental health self preservation. I do me. 😎😘
                          Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

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                            #14
                            Originally posted by matthew55 View Post
                            Ignorance is as bad as denial. The only person who is hurt is yourself. How does that make sense?
                            That's your opinion, to which you are entitled but please realise and respect that other people have different opinions - whether they do or don't make sense to you is neither here nor there.

                            It's like your wish not to prolong your life, which is how you want to control things and which other forum members respect and understand and don't say "The only person who is hurt is yourself. How does that make sense?"

                            There is no right way, no wrong way, just what's best for the individual in their particular situation.

                            😘😘
                            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                            ​

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                              #15
                              Oh boy you really have it in for me today girl. What did I do to deserve this? Express an opinion?
                              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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